Columns

I Must Use My Energy Wisely, but Use It I Can

When my body feels like it’s running on fumes and I’m in need of a pick-me-up, I watch the musical comedy “Once Upon a Mattress.” The story, which famously starred Carol Burnett in various roles on Broadway, follows a selfish queen, her adult son, and the affected kingdom. The…

How I Cope With Loneliness While Living With Chronic Illness

Living with chronic illness is often a lonely road. Born with cystic fibrosis (CF), I’ve often struggled with isolation, feeling alone, and living a different lifestyle from most people. Before joining my disease community, I thought I was the only one. Thankfully, I’ve developed skills for coping with…

‘My Shot’: What It Means to Be a Survivor

My family and I were finally able to see the Broadway sensation “Hamilton” live on stage at the Durham Performing Arts Center in North Carolina. I’d already seen the pro-shot film on Disney+ and memorized the entire album before that. Still, getting to a live show has been a…

My Mental Health Checklist for Living Well With Chronic Illness

Mental health struggles often co-occur with chronic illnesses. This was true for me while living with cystic fibrosis, and still is, four years after my double-lung transplant. I’ve struggled with anxiety and depression my whole life, and in recent years, I’ve dealt with post-traumatic stress. Awareness is helpful,…

‘Watch What Happens’: The Importance of Writing

The Broadway musical “Newsies” chronicles the true story of the New York newsboys’ strike of 1899. In the song “Watch What Happens,” Katherine, a journalist, scans through a selection of newsworthy headlines. The lyrics open with, “Write what you know,” a piece of advice all writers have been given.

9 Things Cystic Fibrosis Taught Me About Life

My mom has always said that “in adversity there is blessing.” For Cystic Fibrosis Awareness Month I wanted to share the golden nuggets of wisdom I’ve been blessed to learn while living with cystic fibrosis (CF). Even though it’s been four years since I had a double-lung…

‘When I Grow Up’: Aging With CF Is a Gift

The song “When I Grow Up” helps open the second act of “Matilda the Musical.” The show, which ran on Broadway, is based on the book by Roald Dahl and includes a handful of dark plot devices that the 1996 fantasy-comedy film version does not. The children of Miss…

Are Emotional Spoon Shortages Driving Your Exhaustion?

I’m beginning to rethink the sources of my fatigue. Yes, sickness and physical activity are still real sources of exhaustion, but I’m realizing I’ve neglected a deeper flavor of struggle.   Many of us sick folk are familiar with the “spoon theory.” The analogy goes…